What a coincidence . . .

Wow! Wow! Wow! Exactly one year ago today on 2/10/10, Jason and I got the results of my 6 month scans and the wonderful news: N.E.D. "no evidence of disease". In a weird date coincidence I was back in Dr Frenette's office today, one year later, for my 18 month scans and was thrilled to hear the same news!! (that is from the CT scans . . .still got a bunch of other results to come in yet but not expecting any bad surprises!)

Logged on here like I do every so often . . . just to see where I had been . . . and was shocked to realize that it had been a full year since I had written . Weird.

Maybe I will take it up again . . . clearly it was something I "needed" when I was sick and then dropped like a hot potato when I was well . . . . but now with some distance and perspective, might be fun to rant and rave above all kinds of things . . . .lots of possibilities . . . and I won't even have to change the title . . .truth is truth.

The Power of Words.

There are quite a few words in the cancer world that you don’t really hear much in other places—or at least, you hope not to. Words like: recurrence, chemotherapy, radiation, advanced disease, immuno-compromised, neutropenic, transfusion, stage four, and biopsy . . . just to name a few. There are a couple of words and phrases in this arena though, that are music to the ears of the cancer patient and their families. These words . . . words like: stable, benign, and remission, give you hope.

Another word that you hear all the time in connection with cancer is “cure”. As in “Race for the Cure”, “he’s so smart he could cure cancer”, “searching for a cure” “finding a cure” etc. etc. etc. But this is also a word . . . the “cure” word . . . that you will almost never hear from an oncologist. They just don’t trust it.

Today, my oncologist, Dr. Gary Frenette, said, “We will never call it that . . . we won’t say you’re cured, until you die of something else.” Both Jason and I thought that was hysterical and completely appropriate. We were in Dr. Frenette’s office to get the results of my “6-month” scans. Everyone I know from the cancer world dreads scan - week. It’s just so full of anxiety . . . and hope. Of course you want the scans, and you want to know the results, sort of . . . kind of . . . I mean, if it’s good, you want to know, but, if it’s not, then, well . . . not so much. Still, you have to go. And sometimes when you go, the words they say . . . make you cry.

Today, the words Dr. Frenette said were : NO EVIDENCE of DISEASE! Otherwise known in cancer speak, as N.E.D. The best damn acronym in the world if you’re a cancer patient. (It doesn’t mean cure . . . there might still be some cancer cells lurking around in there somewhere . . . but they couldn’t find any, and they looked in a lot of places!) And so I cried, and laughed, kissed my husband, and danced a little, smiled a lot, and cried some more, had lunch with Jason, went to a company meeting, came home and hugged the red-haired boy, said some thank you prayers . . . a lot of those, sat down and wrote this to you . . .and stopped for just a moment to think about the power of words, and how it is the little short ones like love, and hope, and n.e.d. that can change your life.

POST SCRIPT:

No, I am not yet done with the oxygen chamber (another week or so!) and the radiation necrosis is still a bit of a problem (it’s possible that it may require a graft or some other procedure down the road but that is yet to be seen.) Yes, there is still some pain, but it’s manageable. Yes, I will still have doctor’s follow up at least every 6 to 8 weeks and still take 5 or 6 pills daily (for a long time probably) but that’s not a problem at all. We won’t actually scan again until early August and if those scans look good . . . then we will go to a once a year scan schedule . . . and normal regular old follow up.

Thank you . . .

 . . .for all the wonderful birthday wishes. 45! Wow, where does the time go? I swear that it was just last year that I turned 32. It was a very low key birthday---nice to spend time out with friends for dinner on Friday night at Mac's and to have Saturday and Sunday off!  As a special treat, they moved my treatment time to noon today so I didn't have to get up at the crack of dawn to get into Charlotte--almost felt like a real long weekend. 

On a much sadder note, I would like to thank all of you who have kept my Uncle Tommy and Aunt Chris in your prayers and asked me often  about her progress.  Chris lost her battle with lung cancer on Sunday morning--- though not unexpected, it was extremely sudden. She had been feeling relatively well, was back here in the states, and looking forward to settling in to their new home. She had several seizures on Thursday and Friday and then a final one on Saturday night/Sunday morning. We will have a service tomorrow evening and then, a burial in Holland--something she wanted very much.  

Again, thank you for your prayers, and for continuing to check in on me here, I continue to feel well, to be skinny, to be impatient for these oxygen treatments to be over, and to be grateful for all the people who love and care about me.   

Happy New Year! Here is a Post-Holiday Update . . .with cool photos!

Hello All!

I hope each of you had a wonderful holiday with your families and that you are looking forward to a wonderful new year! I am looking forward to turning 45 in ten days . . .never been more excited about a birthday :)!

Haven't written here in well over a month so I have much to catch you up on! First, Jason and I spent a lovely Thanksgiving in Alabama with his parents, eating great food and touring the soon to be done new house. Charlie spent Thanksgiving with his Dad in the NC mountains and also had a great time. The three of us then traveled to Chattanooga TN on the weekend before Christmas to exchange gifts and eat more great food with Jason's brother's family and his parents. The Todd Christmas celebration was a huge success (complete with some major Nerf gun wars and a sweet potato souffle that was to die for!) Christmas picture turned out awesome considering we had a whole 6 minutes of preparation and shoot time (Thanks Auntie April!) Home for Santa (who dropped off an Xbox 360 for Charlie, a new camera for me, and an iPhone for Jason!) and then off to Virginia on Christmas afternoon--with both dogs-- for the Oakes/Martin Christmas extravaganza. This marked the 45th time that I have had Christmas dinner at my grandmother's house surrounded by all my aunts, uncles and cousins. Amazing! I still sit at the kid's table with my sister Mariea, and cousins Toby, David and Shell. Now though, the table seats 9 or 10 because all our spouses are squeezed in too, and all of our kids sit at a coffee table that is in the back bedroom (moved there from the living room where there is now a second overflow table!) When it is just our family we are at 35 people but we always add an extra 2nd cousin or two, or a new boyfriend or girlfriend here or there so the crowd is rarely smaller than 40. Awesome. Crowded, but awesome. Spent some really fun time with Mariea, Anna and Jimmy and of course my parents. Everyone tried out the new Band Hero that Anna got for Christmas. Check out the pics of Bobby and Vicky on the drums!

Now at last we are home and settling in for a few days of peace and tranquility after taking it all down, packing it all up and putting it all away. Amidst all of the holiday chaos I worked a couple of real estate deals . . .sold a lot on December 23rd and CLOSED it on December 30th . .cash deal for $600K--SO much fun, and have another house here in the neighborhood that is set to go to contract next week. I am having a BLAST selling again! A little bit crazy though because of my other big news.

I have taken up submarine diving. I'm not kidding. Really.

Well, not really, only sort of.

Let me explain.

If you have been keeping up with this blog, you know that I had a serious scare back in October when some persistent pain in my throat sent me to the doctor, CERTAIN that the cancer had returned. Dr. Kamerer, my amazing surgeon, assured me that he didn't see any indication of that, and that I likely had a cold, or a virus, or a non-cancer something, but that I shouldn't worry and should come back if the pain didn't go away.

So . . . .the pain didn't go away, and during the week of Thanksgiving I discovered the reason--a HOLE in the side of my throat, just in the place where they cut out the cancer and aimed the radiation! REAL paranoia this time. Back to Kamerer's office and low and behold, HE can see it too! We know that it is one of only 2 possible things, the cancer IS back, or I have something called radiation necrosis. Only way to find out is to go in for a little outpatient surgery/biopsy and see what happens. (Did that on the Wednesday after Turkey Day and woke up from the anesthesia to see which of the bad things it was.) Obviously, the cancer being back would be really, really, really bad while the radiation necrosis would just be really bad.

And, really bad it was, or is, or whatever. What a relief.

Turns out that about 5 % of people who get radiation to the head and neck get this thing called radiation necrosis. It is a product of how radiation works. In general, it kills the cancer cells by destroying the blood flow to them and their ability to get oxygen. It does this to the healthy cells too, but usually most of them are able to repair themselves. In the case of necrosis though, the "healthy" cells are so damaged by the radiation that they can not repair themselves and they begin to die. Problem is, it's really tough for the body to repair things in this area on its own because now, the whole area doesn't get much blood flow or oxygen, and it becomes a vicious circle (or in my case a vicious HOLE the size of my thumb) of non-healing, dead, and dying tissue that hurts like hell. Gross. Painful and Gross. Did I mention gross? And painful?

Anyway, the ONLY treatment for it is to try to force oxygen into these tissues so that they can begin to repair themselves. The way to do that is by spending time in the Hyperbaric Oxygen Chamber. This is the "dive chamber" that they put divers in who don't decompress properly. It is effectively like diving in a submarine. They put me in an acrylic tube filled with 100% oxygen, then they pressurize it and take me down to 2 atmospheres below sea level and leave me there for a little over 2 hours and then, they bring me back up. I go every weekday. If you include commute time, dressing and undressing, and the time it takes to "dive" and "surface" then the whole thing takes just under 4 hours. But the good news is I only have to do it for forty days. Yes, I did say 4 hours a day and 40 days . . .but, I mean, really, Noah managed it in an ark with what must have been thousands of animals, and he had to build the  damn thing first . . . I can do it. . . . I know I can . . . It won't be that bad . . . there aren't even any animals in there . . . . . . BUT, there's not ANYTHING else in there either! Crap! You can't take anything in there with you . . . .no cell phone, no computer, NO BOOK!, no paper or pen, no iPod, no-thing. There is a TV screen outside the tube that the technician can adjust for you and it has a DVD player attached. Over the holidays, I watched every Christmas movie known to man and this week I began re-watching the ENTIRE series, yes, every single episode, of LOST. Plan to be finished just before the final season begins in early February! (Oooooh, how I love that show!)

However, you can not possibly imagine how frustrating it is to have all these THINGS TO DO and then be isolated from doing ANY of them for 2 1/2 hours at a time. It's crazy. But I am going to learn to appreciate it. I am taking up meditation, and making mental lists, and counting my blessings, and remembering that it could certainly be worse . . . .and it is supposed to be REALLY good for your skin. (I am looking younger every day!) And when it's done, and the pain is gone, I might really believe that I am cured! Hell, I might even BE cured!

So,that's all for today. Thanks, as always, for your continued prayers. Please keep 'em coming.

Cool pictures included of much of the stuff that I mentioned . . .The tube, Christmas pic (yes, my hair really is that color) and . . .  Can my parents jam or what?

Please take the time to email me at tjoakes@bellsouth.net, call or text (my text function works now!) to 704-905-0189, or comment here when you get the chance. I love hearing from you!

Have an amazingly blessed day!

Happy Thanksgiving!

I came across this earlier in the week and it just seemed right, and very true to me, so I thought I would share it here today with you. It is an awfully powerful idea.

If the only prayer you ever say is thank you, that will be enough.

(From the German theologian and humanist Meister Eckhart, and Oprah)

Since you asked . . .

Alas, my biggest score in Vegas was with my husband :). . . and I'm certainly not complaining about that! 

We had a great time. I played some tournament poker (badly) but had a ton of fun, saw the underwater Cirque show, "O" at the Bellagio-remarkable! and had an amazing dining experience (even without being able to taste a lot of it) at Craftsteak, Tom Colicchio's (from Top Chef!) restaurant-- broke the bank and ordered the tasting menu (because . . you never know what might stand out to me) . . .4 appetizers, 3 meat dishes, 3 sides including a plate with 4 different kinds of mushrooms, and 4 desserts, one with 2 flavors of gelato and one with 4 different kinds of fruit! By my count, 21 different things to taste not including the rolls or drinks! The mushroom dish was a favorite of mine, the Kobe fillet stood out for Jason . . . I would recommend the experience to anyone who has a spare mortgage payment lying around . . .the service was phenomenal!

Regarding the job, it's great to be back (though I still wish I didn't have to work on weekends!)--check out the cool article in the Charlotte Observer Home section tomorrow (11/14) about our new smaller home plans and about being the ONLY home builder in the nation to ever win the National Housing Quality Gold Award twice!

That's all for now . . .1/2 hour left of Friday the 13th and no calamities to speak of!

Answer: "Yes, I am sure that I have ankle cancer."

Question: "Did you say that your ankle is sore after you twisted it yesterday?"

I just want you to know that the question/answer scenario above feels like a perfectly reasonable exchange of ideas when the person answering the question has had cancer. I understand from others that it abates some with time, but just now, paranoia is hard to reason with. Every twinge, ache or pain is analyzed and cataloged. The doctor is called (twice this week) and seen (only once!) Reassurances are offered, but not believed. The Internet is scoured for symptoms of recurrence. First, you want to find someone who has the same symptoms as you and who WAS having a recurrence, and then, you remember that in this particular case, it would be better to be WRONG and not have cancer, than to be RIGHT and to have proven to the medical profession that you know a thing or two about this disease! Good grief! Eventually you stop looking. There are a lot of stories and some of them do not turn out well.

There is however, at the moment, no reason to believe that mine will not turn out well. No more reason than there ever has been I mean. . . . which is to say that the scans looked pretty good and we will do them again in early February and then we will see.

This all got a little out of hand last week because my throat hurt. A lot. Differently than it had before. What to do? I had just seen the oncologist and he said the scans looked good. My appointment with the ENT was not scheduled until the 17th. But it hurt, especially when I coughed. Oh Lord, what now? Call the doctor! Insist that he fit me in! (Fine, Mrs. Todd come in right now!) Drive 30 minutes, wait 30 minutes, talk to the nurse, tell her every symptom I have had for the last 45 days and why this feels different! What do we do now?! More surgery?! Will they have to cut more into my tongue this time?! Gross! What about talking and swallowing?! Oh damn, I will have to get the tube back in. What if I can't talk? I should record my voice for Charlie. What should I record? I will read to him! What should I read? Maybe the Harry Potter books? Yes that's a good idea! Where was I? Oh yeah, my throat hurts. How can this be happening?! What are my options? WHAT DO WE DO NOW?

"Perhaps, we should just see what the doctor has to say."

Hmmm . . . . Not a bad plan.

Enter the DOCTOR. Asks several questions . . .where does it hurt? On both sides or only one? Any coughing? Nose running? Let's take a look. Peers around in my throat for awhile. Smiles benevolently. "Everything looks fine in there. . . . Mrs. Todd, . . . . .I think you have . . . .a . . . cold."

A COLD.

Another sweet smile.

At least he didn't pat me on the head.

"Since you came in today, I don't need to see you on the 17th of November, please schedule you next appointment for 8 weeks from today--the week after Christmas. Enjoy your holidays."

WHAT?! Are you kidding me? I don't want to wait 8 weeks, I want to see you every week! I want you to scan it every day and I want an affidavit signed in your blood that you are sure that it is not coming back. I know that this is NOT too much to ask. This is your job. Do it for heaven's sake. Why are you looking at me like I'm crazy?

Because you are crazy. Nuts. Certifiable, in fact.

By the time I got home, I was sure that he was just some quack who wouldn't know cancer from a hole in the ground (or in this case, from a cold). Let the Internet scouring begin! (sometimes you have to take a break to eat and pee and meet the school bus and talk to your boss about going back to work . . . .thank God, or I might still be there)

A week passes.

In that time we 1) decorate the house for Halloween (scariest one on the street complete with scary music and the fog machine! Awesome!) 2)develop a plan for going back to work (on November 9th, with full pay and my old job description! Yippee! ) 3) meet with Charlie's teacher (great report card!) 4) get things organized for Mom to visit and take care of Charlie while Jason and I are in Vegas (Nov 4-8, we leave tonight!) and 5) cry uncontrollably ALL the time, over tiny things . . .convinced that I am dying and that I will never get to use the fog machine again. HUH?!?!?

Wake up yesterday and discover that for the first time in 3 months . . . I have gotten my period.

Which sort of explains the crying, and the irrational behavior, and some of the paranoia, but does not, in any way, explain my sentimental attachment to the fog machine.

Great! Just when I am going away for a fun and romantic trip with my husband, I have a cold. . . and my period.

But, my ankle does not hurt.